My sister Anna was born with a very rare genetic disorder called Alagille Syndrome (ALGS). There are only about 8,000 cases of ALGS in the United States and only a couple of hospitals that treat it.
Last year, Anna challenged her friends to perform Rare Acts of Kindness in honor of Rare Disease Day.
It was such a success that this year she’s making a week-long celebration of it!
I’m honored to let her take over my blog this week to spread the word about this event and raise awareness for rare people everywhere!
Guest post by Anna Laurent
It’s almost Rare Disease Day 2016, everyone!
I’m so excited about the theme this year, Patient Voice because it highlights the importance of advocacy on behalf of those with rare diseases.
For those of us who have a rare disease and are able to advocate for ourselves this is simply a part of living life. Whether it’s telling a friend about your condition for the first time or explaining your physical limitations to an employer, our lives are spent advocating.
In some situations, those with rare diseases aren’t able to advocate for themselves. That’s when our families, friends or caretakers take on the role.
This is an incredibly difficult job. I remember when I was young and unable to express my unique needs, how my parents took on that important task. They gave me a voice in the world when I was unable to do so myself.
To be honest, there are times when advocating feels more like fighting. Facing the reality that this battle is never ending can be overwhelming.
Life with a rare disease can feel very lonely, but in the middle of some of my greatest trials my family and friends rallied around me and supported me every step of the way.
Together, we can ALL unite to support and celebrate the amazing impact rare people make on our world.
Together we can increase awareness for ALL rare diseases.
Together we can make sure the voices of ALL rare people are heard.
In honor of Rare Disease Day, I challenge you to join us in celebrating rare people by performing acts of kindness in your community from February 22nd to February 29th.
Make sure you snap a photo and share it online with the hashtags #RareActsOfKindness and #RareDiseaseDay!
To make things even easier, we’ve designed printable cards to share with your #RareActsOfKindness recipients. Click here to print your #RareActsOfKindness cards.
For ideas of ways to celebrate and to connect with other rare people and the folks who love them, make sure you join our facebook event!
Last year’s Rare Acts of Kindness was a huge success, making our communities a little more kind and warming the hearts of rare people around the world. I can’t wait to see what an impact we can make in 2016!